Coarc…what?

Curly (not her real name) was born in a little West Australian town March 2013, weighing a healthy 4.05kg with a strong heartbeat. Whilst still in the hospital I felt at one point that her breathing was a bit fast, but a midwife quickly dismissed my concerns claiming that this was normal. We took our little girl home after five days. Proudest moment walking down the hospital halls and into the car park holding our tiny little newborn. At home we sat on the couch and stared at her, “Now what?” I asked. We were elated and ready to start parenthood, but it didn’t take long before I started noticing other things seemed amiss.

People had commented that she seemed to have her eyes closed all the time. I felt defensive, it was just in her photos right? By day 7 her jaundice hadn’t subsided and was getting worse and so were my baby blues. It was a difficult time, I have a stubborn independent streak, and don’t like to appear weak or incapable. But this newborn thing was overwhelming, lack of sleep combined with the wide-eyed OMG I’m a parent, who am I now and what have I done!? Created in me a hysterical hermit. It felt like EVERYONE wanted to visit, everyone wanted to meet this little girl and all I wanted to do was lock myself away in the bedroom with my baby and stay there for a few weeks.

Something wasn’t right and I knew it, she was always sleeping and her breathing was fast and deep. It was also around this time that breast feeding became difficult. Our baby wasn’t waking to feed. She slept all the time. I had no idea what newborns were supposed to be like so I tried not to worry. until day 12 when my mum found me in a state of frenzy. Curly hadn’t fed for 6hours. We tried expressing milk and feeding it to her with a syringe, but she wouldn’t wake up. I was in a fragile state, I didn’t want to be the manic, paranoid newbie mum, and I’m so grateful for my own mother who said, “take her to the doctor, something’s not right.” It was all the confirmation I needed.

Thankfully our doctor managed to fit us in at closing time and sent us straight up to the emergency where Curly woke up to bright lights and people crowding around, this was enough stimulation to have her feeding for a good 20 minutes. The emergency doctors, seeing her awake and feeding, claimed she looked healthy but to keep her in overnight anyway. They attempted to get a pulse in her feet, no machine seemed to be working (of course we found out later it wasn’t the machine’s fault at all!). We were left in a room where a midwife informed me I should sleep and she would come in around the next feed to see how things are. This put my mind at ease and I slept, and slept. 7 hours later I woke in a panic, no one had come in to wake us and Curly had slept through as well. A baby had been born quite premature over night and in the excitement we had been forgotten. When the doctor arrived the next day to check on us she phoned PMH (Princess Margaret Hospital) who requested we be flown to Perth as a precaution and given antibiotics, our country hospital didn’t have the facilities or expertise. At this point, H and I were still (relatively) calm, we were under the impression it would be a small infection likely fixed with antibiotics by the time we got to Perth.

The red beanie looking thing is a CPAP hat which attaches the oxygen hoses to the head. Two tubes are then stuck up the nostrils. Not the most pleasant experience for a little baby, but she didn’t notice it once in properly. This photo was taken after she had arrived at the NICU.

Late in the day, after the premature baby and mum had been flown to Perth, the flight nurse and doctor met with us. The flight doctor checked over Curly, this was the first time we heard anything about her heart mentioned, the doctor could hear a murmur. I dismissed this, it seemed too surreal for us, I was convinced it was just an infection. They attempted to prepare Curly for the flight, which involved fixing a CPAP cap to her head, she screamed and fought and screamed. I don’t know how long this took, it felt like hours and I was an absolute mess.

I remember the flight, but I was unable to sit next to her, I could only hear the crying occasionally over the sound of the engine. Feeling utterly helpless I just grit my teeth and tried to zone out. When we landed at Jandakot airport there was no ambulance ready for us, we had to wait, and Curly continued to scream and fight. I broke down in the toilet there and then demanded they let me at least hold her, to try and comfort her, even with all the wires and oxygen attached. In my mind I was sur
e she just wanted her mum, that she would stop crying if they let me hold her and feed her. It was freezing and the loneliest wait, it felt so cruel not being allowed to feed my distressed baby. The ambulance finally came with a priority 1 authorisation, traffic was at a standstill due to a game on in Subiaco, we flew down the outer edges of the freeway making record time and arriving with our hearts in our mouths. Curly was rushed up to the NICU [Neonate Intensive Care Unit] where a team of doctors and nurses hooked her up to some incredible looking machines. I looked on in a daze not wanting to leave her side but unable to get any closer. I don’t remember well what order things happened after that. I was shown where the breast pumps were, given a key and room to stay in, a friend arrived for some support and my husband and mother-in-law not long after that.

think it was around 9pm that night a Cardiologist came to see us and explained that Curly had a ‘Coarctation of the Aorta’ or a narrowing in the aorta, the surgeon wasn’t available for another two weeks but they could insert a stent through her femoral artery to allow blood flow, her aorta was almost completely closed off and in critical condition, they needed to operate now. I broke down again. It was surreal, surely this was wrong. We signed some forms for the anaesthetist and went back to our ‘parents’ room to wait. I’ll never forget the moment we were allowed back in to the NICU to see her once the procedure had finished. Such a tiny little thing with tubes and wires attached everywhere, in her neck, arms, nose, feet. And yet I felt reassured, the machines were helping her to breath, giving her fluids, she wasn’t in any pain and finally, she could get some rest. So did we.

Recovery took a little time but she passed each milestone with flying colours and we were soon discharged locally to await surgery. H had been there with us during the worst of it, but he needed to go home for a job he had started a couple of weeks ago, thankfully they were understanding and when the surgery came around he was able to drive back to Perth. It was what we had been waiting for all along, the ‘fix’, but I still wasn’t prepared for the moment I kissed Curly goodbye and the aneathetists wheeled her away. It was about a three hour wait, I couldn’t speak the entire time…every risk and complication the surgeon had laid out for us kept trying to push it’s way into my thinking. But everything went to plan, and she recovered quickly, like a completely different baby. Once again we were discharged locally before being allowed to return to home.

Since the ordeal she’s had one balloon angioplasty to stretch out some scar tissue, but otherwise Curly continues to flourish and delight us every day. Sometimes I feel sad when I think about what we had to go through, what we missed out on in that first month of her life. But we were the lucky ones, and Curly is alive today because of the amazing care she received at PMH. We are so grateful to the cardiology department and the NICU for fixing our little girl.

Curly’s heart post-surgery and balloon angioplasty. I have circled the narrowing (much improved). Immediately below it is a small aneurysm, probably from the surgery, not an issue for her growing body though.

Thankfully open heart surgery wasn’t needed and the scar now is barely visible. This was taken a few months after surgery.